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5. Terms of data access

Once proposals are approved the following conditions and undertakings are required as conditions of access:

Data Sharing Agreement

Before any data are shared a signed sharing agreement must be in place between the requestor’s institution and the University of Oxford. This agreement will be sent to the requestor once their application is approved, and will include a copy of the approved project proposal as a schedule.

Signing Authority

Requestors should be acting as members of a recognised academic institution, research organisation or health organisation. Their request should come from a recognised email domain. Their organisation should have formal policies and procedures (i.e. IG Toolkit, ISO 27001 certification or System Level Security Policy assessment) to comply with any legal, ethical or data protection constraints and to ensure that the dataset is stored securely and used responsibly.

Ethics and Research Governance Approval

Where applicable Ethics Committee approval for the research is the responsibility of the requestor. The requestor, in conjunction with study investigators, may also need to obtain approval from the Research Ethics Committees responsible for the MCPS. Local Research Governance approval and R&D approvals, if required, are the responsibility of the requestor. Approvals will need to be in place before any data are shared.

Limitations on Use

The data will be used for the purposes of medical research only and within the constraints of the consent under which the data were originally gathered, and of any contractual agreements between the MCPS and its funders or external data sources. Access will be permitted only for research that is consistent with the originally-submitted project description, has been ethically and scientifically approved by appropriate independent reviewers and where the use of the data will be for the demonstrable benefit of health and/or social care. Data supplied may only be shared with requestors named at the time of the original application or in subsequent applications and specified in the Access Agreement or later amendments. Data from the collection cannot be shared with individuals outside the requestor’s research group without formal approval by the MCPS Principal Investigators.

Identifying Data

The data provided to researchers will not contain any personally identifiable variables. Data sets will be ‘pseudonymised’ with encrypted participant identifiers (PIDs). The Access Agreement will contain confidentiality undertakings to further safeguard participants' privacy. Recipients must agree not to link the pseudonymised data provided with any other data set without permission. Recipients must not attempt to identify any individual from the data provided. Should recipients believe that they have inadvertently identified any individual, they must not record this, share the identification with any other person or attempt to contact the individual.

Intellectual Property

All Intellectual Property (IP) rights in the data are and shall remain at all times the property of UNAM and the University of Oxford. All Arising IP shall vest in and be owned by the requestors. The requestors will cover any cost for the protection of Arising IP. The requestors shall promptly disclose any such Arising IP in writing to the Principal Investigators. UNAM and the University of Oxford will be granted rights to use all Arising IP for academic and research purposes, including research involving projects funded by third parties provided that those parties gain or claim no rights to such Arising IP.

Payment of Access Charges

Data requestors from institutions in high-income countries are expected to pay access charges to contribute to the administrative cost to the study of reviewing the application and preparing data for sharing, etc. Where these are applied, no data will be provided to the data requestor until or unless the access charges are received in full.

Data Release and Delivery

Once the proposal is approved and the Access Agreement signed, phenotypic data and its documentation will be generated in CSV (or any other pre-specified) format, encrypted and released in a secure manner. The genetic data will be shared by granting access to an online research analysis platform enabled by DNAnexus technology and powered by Amazon Web Services (AWS), where researchers will be able to access both the genetic and non-genetic data, perform their analyses and download their results.

Publicity and Dissemination

The MCPS team reserves the right to publish the title, the names(s) and affiliations(s) of the Chief Investigator(s), a lay summary and a scientific abstract of each piece of collaborative research for which access to the resource has been granted, before identification or publication of results. Requestors who do not wish details of their study to be openly available need to state this in their data request and give the reason. The requestor shall not use the name or any trademark or logo of UNAM or the University of Oxford in any press release or product advertising, or for any other commercial purpose, without prior written consent.

Authorship and Approvals

Access Agreements will specify expectations regarding authorship and acknowledgements on research outputs. Collaborations require at least one co-author from the MCPS study group. For Open Access Agreements no authorship from the MCPS team is required, but requestors are nevertheless asked to submit proposed publications to the MCPS team for review not less than 30 days in advance of the submission for publication.

Publications and Open Access

All publications of the results in a peer-reviewed journal, or as a scholarly monograph or book chapter, must be made available from PubMed Central and Europe PubMed Central as soon as possible and no later than six months from the date of final publication. Journal requirements for data release and deposition that may be requested following publication of an article must be discussed with and approved by the MCPS Principal Investigators prior to submission of a manuscript.

Integration of the Data

After completion of work using released MCPS data, the original dataset as well as any derived dataset and/or variables generated during the research must be returned to the MCPS central data repository for archiving and/or merging with the main database for future use. If considered appropriate, the MCPS staff may carry out independent checks and/or validation of the data and results to ensure the continued data integrity and reliability of the study findings.

Monitoring and Accountability

The data requestor is required to submit annual reports and any other information reasonably requested to evidence the work undertaken in connection with the proposed project. If there is substantial deviation or change in the planned use of the data, further approval will be needed. If there is substantial delay or difficulty in completing the planned research, the MCPS team will have the right, after consultation with the Nuffield Department of Population Health Data Access Oversight Committee, to terminate the work if in its view there is little chance that the problem will be rectified. Under such circumstances, all data that have been provided must be deleted and a deletion certificate provided.